Admin Core

Boston Children'S Hospital, Boston MA

Investigators

Abstract

ABSTRACT/SUMMARY: The Administrative Core is designed to ensure efficiency in the development, dissemination, and application of new knowledge obtained by the Spastic Paraplegia Centers of Excellence Research Network (SP-CERN) - Rare Disease Research Consortium (RDCRC). The Central Administrative Core (CAC) is responsible for the overall administration of the consortium and will oversee and coordinate interactions between the various components and projects of the consortium. To achieve this goal, the CAC leadership team is comprised of Dr. Darius Ebrahimi-Fakhari as the Director of SP-CERN RDCRC, Dr. Stephan Zuchner as the Administrative Director, Dr. Michael Shy as Clinical Team Liaison, and experienced clinical research coordinators Joshua Rong and Nicole Battaglia. The Internal Advisory Board (IAB) will interact directly with the CAC on monthly conference calls. The IAB includes site Principal Investigators (PIs), representatives from SP-CERN Patient Advocacy Groups (PAGs), the lead Biostatistician and Bioinformatician, the National Institute of Neurological Disorders and Stroke (NINDS) Program Director covering the Hereditary Spastic Paraplegia (HSP) portfolio, and Data Management Coordinating Center (DMCC) representatives. We have also added a Clinical Trials Committee and a and Working Group for Gene-based Therapies, both comprised of recognized and experienced researchers and clinicians to interact with the IAB. Finally, the CAC will regularly consult with the SP-CERN External Advisory Committee (EAC), which is composed of internationally recognized investigators, PIs from additional RDCRC, representatives of the PAGs and of the DMCC.